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Brief Update: Brain Mets

Balancing the need to conserve energy and it being unfair for the entire Facebook & Twitter social media Universes to know the latest on me while you don’t, I am simply cutting & pasting the latest medical news on me from my Facebook post from last week (Twitter also just got a copy & pasted Facebook post).

As a reminder: I keep Facebook in constant up to the moment update on my medical situation whereas my personal blog has a 1-2 week lag time, but this is a big one. ALL of my medical Facebook posts are “public” so there is no need to be a Facebook member to read!Just hit here: https://www.facebook.com/marsilje

Hitting the above link or jpeg below will not pull up cute puppy or kid photos just medical stuff! 🙂

Copy & Pasted Facebook Post:

Hi Everyone, this post is a bit long but I have some very important/major medical updates to share for those interested!

Before the good news, first the disappointing news… I found out last night that I have (5) brain metastatic tumors, including one that is causing near-term medical danger. These are the probable cause of many of my recent symptoms (vomiting, general weakness, near-distance vision deterioration etc.). This is a case in point to let your oncologist know side effects! I honestly thought they were due to toxicity of my recent checkpoint inhibitor immunotherapy (very plausible). Upon hearing the side effects, my EXCELLENT oncologist immediately sprang into ASAP action (case in point on the benefits of having as good an oncologist as possible) – recognizing that the same symptoms could also be due to brain tumors, he got ASAP brain scans etc. lined up for me so that I reported the side effects Monday AM and I was diagnosed on Wed. night with treatment plan in place on Thursday morning!

Now the GOOD News!

– All (5) brain tumors look to be treatable with targeted SBRT radiation (Whew!!). This 5-day radiation treatment will start ASAP due to the tumor presenting medical danger. Brain tumors are actually highly treatable if you catch them early, especially if SBRT is possible. So even though yes… it really sucks to have secondary brain cancer (I didn’t see that one coming!) – both my radiation oncologist & I are highly optimistic it is a solvable problem!

– In the brain scan there are signs that my current self-made immunotherapy witches brew {FOLFIRI, Avastin, Tecentriq}*may* be working! All the tumors showed signs of inflammation and the largest one showed signs of interior necrosis (the other smaller ones are too small to assess). The large one actually looks on brain scan similar to how a brain tumor would look *after* radiation therapy! I have a full body CT-scan next week to assess if tumors elsewhere in my body show similar effects or not….

So that is my major medical update. Hearing I had secondary brain cancer (mets from my colon cancer) was a MAJOR “oh crap!” blow last night but hearing the details today made a bad situation better than I ever expected!

Case in point – never give up on HOPE!! There will be A LOT of medical treatment stuff going on with me the next few weeks, so I may not be as active online for a while – I’m not out of the danger woods yet, so good vibes or prayers are welcome, whichever your preference!

My full body CT-scan in October 11 – we’ll see then if these “possible” signs of immunotherapy action are real or not. As of right now they are just hints. We’ll also see in general how my overall body lesions are responding to my witches brew. Thank you for your interest and support – I truly appreciate it!

Thank you for your last post. I read it thoughtfully.
Tom, the moments you share online with us are made with ingredients of the highest quality: Hope and Faith, Love and Humor. They are nourishing.
You said that major medical treatments were planned for you in the forthcoming days and weeks, so I am to wait patiently for news from you , your family, your followers (I care for them too), your excellent reactive medical team, and “Blink to the rescue” which is so helpful in its own peculiar way.

Dear Tom, I’m sorry to hear about your difficulty walking and hope your strength will return soon. I have been following you for only a short time but seeing your strength as you overcome dreadful side effects is riveting. Seems to me you have survived by always finding possibilities. Keep on keeping on!